Being sick changes everything. I have an incredibly demanding travel schedule this week-end. On Saturday, I'm flying to Chicago, giving 3 talks to PSC Partners Seeking a Cure, a group devoted to a liver disease called primary sclerosing cholangitis. Then I rush back to the airport to catch a plane to Seattle where Pearl Jam's Mike McCready will be playing a benefit concert for the Crohn's & Colitis Foundation's Camp Oasis and Advocacy for Patients with two of his side bands, Flight to Mars and Shadow '86, which is a Hendrix tribute band. I'm very excited about the concert, and of course, I'm thrilled that it will benefit Advocacy for Patients, but when all is said and done, Saturday will be close to a 24 hour day -- hard even for a healthy person -- harder without any food. Then I have Sunday in Seattle, and I travel all day on Monday to get home by about 7:30 pm, if all goes as it should.
For me, it means intense planning. I know I am going to be rushing through security in Chicago, and since the only work day I'll be gone is Monday, and I'll be on planes pretty much all of that day, I'm not taking my laptop. I hope I'm not sorry about that. I've got my meds all packed -- easier said than done. I have Emily (my feline buddy) taken care of. But all of those things are the visible signs of planning.
I have done all I could do to keep my schedule free this week and next week, the week before and the week after. The concept was that if I weren't flattened under a truckload of work the week before I go, I would have more energy for the trip. And since I know I will come home a wreck, I've kept my calendar clear for next week, and am even planning to stay in bed on Tuesday in the hope that I will not get any sicker than I already am. Because I do still have c-diff, not to mention the usual Crohn's and gastroparesis.
But boy oh boy, the best laid plans don't always work that way. Our intakes are up considerably, and the difficulty of the cases is increasing, as well. So this "quiet" week has been anything but. I didn't eat dinner until 9:30 pm last night. That's a long day by any standard.
I confess, I'm worried about how I'm going to manage all this.
When you have a chronic illness, planning is key. Whether it's asking for FMLA leave before it becomes an emergency, or having a living will, or just strategizing around a particularly difficult time at work, planning matters.
And then again, plans fail, too. Knowing that scares me. I suppose I'll make it through this adventure just fine. I just wish it all didn't have to be so darn difficult. Jennifer
Wednesday, April 29, 2009
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